In light of the federal government plan announced in February 2019 to end the HIV epidemic in the U.S., TheBody has created a new series called Eyes on the End. This series will include a snapshot of the HIV epidemic in each of the 48 counties, seven states, and two cities targeted within the plan. These profiles aren’t meant to be the definitive story of the epidemic in each locale, but rather—through sharing some basic statistics and interviews with a few key stakeholders—to provide some context for what’s occurring there, and what it will take to end the epidemic in that area.
The Big Picture: HIV in Kentucky
Urban, young, gay and bisexual men of color and rural injection-drug users are the hardest hit HIV groups in the sixth-poorest state—where Medicaid expansion, unusual in the South, has nonetheless benefited those most in need.
Need-to-Know Stats About HIV in Kentucky:
Of the more than 10,000 Kentuckians living with HIV, the majority are white men (5,508), followed by Black men (2,578). But HIV rates are racially disproportionate: Whites make up 60% of diagnoses and Blacks 33%, but Kentucky is 87% white and 8% Black.
Among men living with HIV, the primary transmission route was male-male sex.
HIV cases are concentrated in the Louisville, Lexington and greater Cincinnati (Ohio) areas. The state’s annual HIV rate falls in the middle among all states.
Annual HIV infections statewide have flatlined in the 300s between 2007 and 2017. In that same period, the number of cases that have progressed to AIDS has dropped from 51% to 18%.
In recent years, Northern Kentucky has seen a sharp rise in HIV cases linked to injection-drug use. The Centers for Disease Control and Prevention (CDC) has recognized more than 50 counties in eastern Kentucky, nearly half the counties in the state, as being vulnerable to HIV and hepatitis C outbreaks among opioid injection-drug users.
That’s a quarter of all such CDC-flagged counties nationwide, but not all of those Kentucky counties have needle exchanges—despite a recent dramatic rise in exchanges statewide overall.
Successes and Challenges Facing HIV Service Providers in Kentucky
- We talked to Elwood Stroder, codirector of Ryan White Part B services for the University of Louisville’s 550 Clinic, the main HIV treatment center in Louisville.
Elwood Stroder: I’ve been in my job a little more than five years. HIV-wise, our state has divided us into eight contracted regions. The agency that had the contract for this area was Volunteers of America, and I was a medical case manager there for a little over four years. Before that, I headed the lab at the Louisville Department of Health for 31 years.
Tim Murphy: The 550 Clinic is legendary in Louisville. Tell us about it.
ES: It came about early on in the epidemic, working with the different state agencies, and in September 2014, the university was awarded the contract for the Part B services, so we’ve worked with them ever since. The clinic has been doing medical services since the early ’90s, and would partner with other agencies on Ryan White Part B services.
The clinic services about 2,000 patients yearly via Ryan White parts B, C, and D. We serve about 1,800 clients through Part B. We pay for medication via ADAP (a part of Ryan White). We make sure clients are eligible for it when they come to us and get them on it. We also pay people’s individual insurance premiums, copays, and deductibles via the [Affordable Care Act/Obamacare] marketplace, and if they’re willing to disclose to their employers, we’ll pay their work-linked insurance expenses as well. We do medical transportation services and emergency financial assistance for people who need help paying for utilities and things like that. Our mission is to get and keep people in care and get them low-cost medicine.
TM: Do you do prevention methods too, like PrEP [pre-exposure prophylaxis]?
ES: The clinic has a small PrEP clinic that is funded by other sources. PrEP here is not in use as much as it is in other states, or as much as I would like to see. Volunteers of America has a grant to do prevention. We don’t even do HIV testing at the 550 Clinic—other agencies will quickly link those who test positive to us.
TM: Let’s talk about HIV in Kentucky overall.
ES: Louisville has about 49% of the state HIV burden, so we’re the largest provider of HIV services in the state. I think Kentucky is unique in how it’s positioned itself to provide HIV services. It’s invested its federal HIV money well, providing a lot of services not provided elsewhere in the South, such as covering insurance premiums, deductions, copays, and emergency financial assistance.
Here in Louisville, House of Ruth focuses on HIV housing. The other big HIV services agency in the state is the Bluegrass Care Clinic in Lexington.
TM: What does HIV look like demographically in Kentucky?
ES: I come from the urban Louisville point of view. We get about two to three new diagnoses a week, and I can tell you what they’re going to look like: African-American or Latinx MSM [men who have sex with men] between 18 and 30. The distant second would be transgender women of color—we have about 33 on our case load. And we also see some older African-American women.
TM: What are 550’s client and staff demographics?
ES: Our annual budget is a little over $2.2 million. All our funding is federal and state grants. Occasionally, people donate and we’ll call it our “gift account” for things that grants won’t let us do, such as to buy food to serve during our support groups.
As for my staff of 23, 14 are female, eight male, and one trans woman, Amirage Saling, who is also the one openly HIV-positive staffer. [See interview with her below.] Fourteen staffers are Black, six are white, two Hispanic, one Middle Eastern. Eight of the 23 identify as LGBTQ, and one member is openly HIV positive.
Our 1,800 HIV-positive clients are mostly half Black and half white, with about 126 Hispanics, 29 Asians, and six American Indians. They’re 78% male, 61% men who have sex with men, 20% female, 7% injection-drug using history, and 1.8% transgender.
TM: Tell us more about your services.
ES: We partner with the University of Louisville dental school, which receives some Ryan White funding. About 900 of our clients have received some pretty expensive dental care through us for free. Someone from Legal Aid comes in one day a week. And when plans on the Affordable Care Act federal exchange become open for enrollment, [we also provide support around that].
Kentucky has had expanded Medicaid since its start in 2014. That was amazing for us, because previously we’d had clients who were not eligible for Medicaid but couldn’t afford insurance. Many clients [who then got on Medicaid] had never had insurance before and didn’t even know how it worked. It was good for all their care, such as diabetes, cardiac, and hypertensive, not just HIV care. It’s cheaper for us to pay premiums and copays on real plans than to pay direct full price for medications [as was, and sometimes still is, the case with state ADAP programs].
TM: Did you see a big shift away from ADAP onto Medicaid among your clients?
ES: Yes, but anyone in our program is still on ADAP, because the whole program is Ryan White Part B funded, so someone on Medicaid can still get certain meds through ADAP.
TM: So, describe the map of Kentucky from an HIV point of view.
ES: HIV here is highly concentrated in the Louisville and Lexington areas. In the rural area of eastern Kentucky, where it’s more difficult to get and keep people in care, you’ll see the opioid epidemic among injection-drug users. Kentucky has the highest hep C rate in the nation. In 2015, Kentucky passed a law allowing counties to set up needle exchanges, so most high-risk counties have been putting them in. We’ve had them in Louisville for about three years. It was a hard-won fight, but it’s done really well. Once you get the education piece out there, most people will actually say, “OK, the stats show that this is very effective.” Just up the road from us is southern Indiana, where the HIV outbreak among injection-drug users was a few years ago, and some of those patients have moved to our area and go to our clinic now.
TM: What are some successes that you want to brag about?
ES: The viral suppression rate in our clinic is at 85% to 86%, and I’m happy about that. Statewide, I think it’s about 67%. Another thing is, [federal agency] HRSA recently allowed us to start providing medication and some services to people in jail. Often in rural county jails, people don’t get their meds. Our local jail was always pretty good at providing meds, but now our linkage-to-care navigator goes there every week to get people enrolled in our program, get them meds, and then do a discharge program with them.
TM: What’s something you would do with more money?
ES: Housing, which we refer most clients to the House of Ruth for. In Kentucky, housing is affordable, comparatively speaking—the average Louisville rent is $500 to $700—but there’s a limited amount of HOPWA funds. House of Ruth has Glade House, an SRO program, so if a client comes in and qualifies, they can stay there 18 months and will come out with a Section 8 voucher. There’s always a waiting list for that. I’d say that 80% to 90% of our clients are stably housed, and the rest couch-surf or live on the streets.
Mental health is also a challenge. We have a social worker on staff, but they can’t prescribe psych meds. For that, you have to go to the U. of Louisville psych clinic, but it can be difficult to get in because of demand.
Client engagement is also frustrating—especially getting and keeping our younger clients in care. When you’re 19 or 20, you’re not thinking about taking meds.
TM: You mentioned the high number of young MSM of color coming into the clinic with HIV diagnoses. What’s behind that, and what are you doing to address it?
ES: Kentucky is behind as far as PrEP goes. It’s not like San Francisco, where everywhere you look, there’s a sign for PrEP. Some people here may not believe the science behind PrEP and U=U [undetectable equals untransmittable].
TM: Are there any centers or programs in Louisville focused on HIV prevention among young MSM of color?
ES: No. We have some generalized groups for queer youth of a certain age. There’s no LGBTQ center in Louisville. But our med school is trained in LGBTQ care.
TM: What are your goals going forward?
ES: To see if we can get more people engaged in care, either on the preventive or the HIV treatment side.
TM: What about with PrEP, specifically?
ES: I’d like to see more advertisements and education. We do a lot of events, and we did a Pride event where I said, “If you want our swag [free gifts like tote bags], you have to answer a question related to HIV, like a few questions about PrEP.” It still amazes me how many people here in Kentucky don’t even know what it is.
TM: Do you see a racial disparity when it comes to PrEP awareness and uptake?
ES: Yes. Our older white gay men seem to be much more knowledgeable about it. There seems to be more stigma with our young African-American men about same-sex in general. Rev. Paul “Bo” Stilwell [who is openly bisexual and HIV positive] has a very small HIV/AIDS agency called Keeping It Real in the predominantly Black West End of Louisville. He’s been doing this for a really long time, but I think he struggles with funding.
TM: Can you tell us some stories that illustrate your work’s successes and challenges?
ES: About six years ago when I was a case manager, I had a client who was 43 who was diagnosed with AIDS in the hospital. He came to 550 in a wheelchair, and we got him to the Part B program, and six weeks later he was on a walker. He continued taking his meds, and three months later, he was on a cane. Eight months later, he was walking again unassisted, had gained all his weight back, and told me he felt good and that it was time for him to go back to work. He’s still doing really well. That’s one of those success stories that I try to hold on to.
A sadder story involved someone who was born with HIV and was fine until his rebellious teens, when he said that he felt fine and wasn’t going to take his meds anymore. He was one of two people who we weren’t able to keep in care. They both died, one at 24 and one at 27, a year or two ago.
TM: What do you think it’ll take for Kentucky to get to 90-90-90 and effectively end AIDS in the state?
ES: Creating a message that would be heard by people who need to be engaged in care. It’s missing, and we need to think outside the box. Aside from a few fleeting PrEP campaigns, we haven’t had that.
Positive POV: Amirage Saling
We talked with Amirage Saling, 51, of Louisville, a medical case manager at the 550 Clinic, who was diagnosed with HIV in 1988.
Amirage Saling: Back in 1988, I never would’ve thought I’d be here today. It’s amazing how far we’ve come with the medicine and now with PrEP.
I grew up in Louisville. It’s the most progressive city in Kentucky, next to Lexington, in a pretty much red state. You can find something to do here any time of day or night.
I’m a transgender female. I knew I was female from the age of six, and I always wanted to be three things: a female, a showgirl, and famous.
I’d been going to clubs here since I was 16. At a certain point, friends I’d been going out with spread rumors about me, telling everyone I had AIDS, and in wanting to prove them wrong, I went to the doctor’s office and got a test—but it came back positive. The joke was on me. I was very shocked. The worst part was when the nursing assistant called to tell me and told me that people like me burned in hell, and that I better not have sex with anyone or I’d be a murderer. I was 20. I didn’t know what to say back to her.
I told a couple friends who of course cried and said that they didn’t want me to die, but of course back then, an HIV diagnosis was a death sentence. I did have one really great friend who let me mourn for a week, then said, “OK, you’ve had a week, now we’re going forward.” We’d make jokes about [my diagnosis], which cheered me up. In early 1989, a doctor said he could put me on AZT but that it might ruin my quality of life, and I decided I’d rather die in dignity than in a diaper, so I didn’t go on it. I didn’t make any major life decisions because I was just in limbo, waiting to die.
Then I got in a really bad relationship with this one guy, so I left him and decided to make better decisions. I was already doing a drag show at amateur night at the Connections nightclub, which is closed now. I met some friends who got me connected to someone who sold hormones, so my first shot was in the dressing room at the club upstairs, on Halloween 1994. At the time, there were no doctors in Louisville that would treat trans people.
I wasn’t on any HIV meds until 2002. I developed HIV-related non-Hodgkin’s lymphoma in 2001, but I beat it. At a certain point, I got connected to a really amazing HIV provider here, Dr. Anna Huang, who put me on the HIV cocktail.
So I was still doing drag pageants but finally realized that there was no retirement security for drag performers, so after 25 years of not being in school, I decided to go back and got my bachelor’s in social work in 2012 and then my master’s in 2019. In school, I developed a network of people going into different fields whom I can rely on with different questions. I’m their HIV and trans queen, so they all come to me for that.
I applied for 72 jobs. I think I didn’t get many of them because I was fresh out of school and had no experience. But there was one interview I thought I’d knocked out of the park. A couple days later, the woman called me and said that she didn’t think her clients would understand “somebody like me.” But ultimately I was hired by the state’s HIV care coordinator program. I did the same work there that I do here. My specialty is working with newly diagnosed people, usually men under the age of 30. The HIV stigma in Louisville is as it was 31 years ago. It has not evolved. I still get clients who are afraid they’re going to die horribly or that anyone they meet and like will shun them.
Tim Murphy: What do you say to them?
AS: Mostly, I say that I completely understand, that this is a life-changing situation, but that people aren’t dying like they used to. Often, for the ones who think they’ll never find love, a year later they gleefully tell me about their boyfriend. They’re so full of joy, and that makes me feel great.
TM: You won a major award for your service in 2015. What was that like?
AS: It was flattering but odd, because I’ve won awards for my volunteer work, and it felt odd to receive an award for work I do in my job. I already have my pageant crowns I’ve won! I do a lot of work with trans people. Next month, I’m hosting an event to teach trans men and women how to create better resumes and interview techniques.
TM: Do you have a lot of trans clients at the 550 Clinic?
AS: We’re starting to see more come in. Elwood has been really big on hiring people who look like our client population. My being here has made it easier for trans people to come here. Often, we’ll take hormones before we take our HIV medication. I’m the only trans staffer right now—the token one!
TM: What’s your take on HIV in Kentucky generally?
AS: There’s still so many yet-to-be diagnosed cases out there. And in eastern Kentucky, there’s the opioid epidemic, and not enough HIV resources throughout the state. You might find an HIV provider and case manager, but not food or rental assistance. Lots of rural folks live with family, and some are dying because of the lack of resources.
TM: What has your life been like as a trans woman in Kentucky?
AS: It’s been not so bad for me, but I have a lot of trans friends who do sex work and have to worry about violence on the street. Many trans women tell me that when they’re shopping, they get laughter and criticism, but they’re afraid to speak out, because so many trans women are murdered nationwide. So they’ll take ridicule over murder.
TM: Is there a strong trans activist community in Louisville?
AS: There are several groups—Transwomen National is the biggest—but unfortunately they’re separated, so I and a few others have been trying to bring them together.
TM: What do you make of your life up to this point, Amirage?
AS: I wouldn’t trade it for anything in the world. The ups and downs have been amazing. I’ve done so much and have been given so much opportunity, even when I was supposed to be dead at age 20. I’m still here! I became a female, a showgirl, and famous, even if just at the city/state level. I’m already a legend here!